I am sorry to hear about your chronic pain. As we all know, pain is a horrible thing. When I read what pain medications you were on, I felt I had to share my experiences with you. I was diagnosed with a terminal illness and was given a 2 – 8 year life span. Because of my terminal status, my first pain management MD Rx'ed a variety of oral pain meds and also had me on Actiq 1000 mcgs 4 x a day for break thru events. I was shocked to see that your pain management doctor has you on Actiq at all – no less 1200 mcg per day for a noncancerous diagnosis.
As you are well aware, Actiq 1600 mcgs is the strongest schedule II oral pain medication there is. There is nothing stronger and you are already on 1200 mcgs. I think the comparison rate is almost 80 times stronger than morphine. If you are taking 4 a day – the cost has to be $4000 plus a month. I am shocked your insurance company hasn't pulled the plug. Mine sure went crazy. Twice in 18 months they refused payment when I went to pick up my Rx's. One of those times I was totally out of Actiq and was forced to pay $4300 out of my pocket for my meds because it took several days to straighten everything out with my insurance. Actiq is very short acting – but with a rapid onset- so it is recommended for breakthrough cancer pain. If you require fentanyl for pain relief, the Duragesic patch provides continuous medication. I have found from personal experience, lower doses of continuous fentanyl provided better pain control. I am certainly not a doctor, but experience has taught me the hard way Actiq and Fentora are Red Flags in the insurance industry and with most pain medication specialists.
Here is my Actiq nightmare. I am considered terminally ill – so the cancer indication was waived. Fentanyl (Actiq) at these massive ORAL doses create havoc on your entire pain system. I can guarantee that you are not just dependent on them – you are addicted. I know – I have been there. PM specialists will tell you that Actiq IS ADDICTING not just physically dependent - and addiction happens within 2 weeks. Actiq and Fentora create tolerance issues rapidly, so you need more and more for pain control – they are not designed for long-term use. They are considered end stage of life pain meds. They also totally shut down your body’s natural pain fighting abilities and put patients in an opioid induced hyper-analgesic state. They sure did for me - I did not believe it at first.
All of a sudden, my pain management specialist had to take a medical leave, so I was reassigned to another specialist at the same major teaching institution. Guess what – no one would prescribe it for me. NO ONE. Cancer only they said. Everything else was OK, duragesic patch and Dilaudid – no problem. NO ACTIQ - NO FENTORA per the consensus at this top 10 major institution – I had a choice of how I wanted to get off it. Fast – three days or slow 12 days. It is a horrible drug to detox. Nevertheless, I have to be honest, after 6 weeks of feeling like I had the flu and every inch of my body hurting – I actually felt better. Those high doses of Fentanyl made my pain much worse. I was already having bouts of level 10 daily, but the massive Fentanyl doses had destroyed any of my natural ability to fight of pain.
You are totally maxed out. You have nowhere to go if your pain gets worse. There are many other options like the pump that are much better choices. I would highly recommend a second opinion about your pain meds. I thought I would die without my Actiq or Fentora. I thought the pain would kill me. I can almost guarantee that you are going to run into a problem, as I did. Either your insurance will refuse to pay $50,000 a year for Actiq, because you are not a cancer patient, or a doctor will refuse to write it. As horrible as that experience was, I learned a hard lesson about pain medication. More is not always better. Sometimes a level 4 or 5 is the best you can hope for, because adding more narcotics can make your pain worse not better. I have learn many biofeedback and meditation techniques that really do help.
I do not want to sound like I am preaching, but it was a horrible experience when you realize that no one is going to Rx a medication. It is best not to ever have to face that – and I have heard several people now that have had identical experiences.
Best of luck in your pain relief quest.
Rare neurodegenerative disease called “Multiple System Atrophy”. Wheelchair, O2, & Bipap, intrathecal pump, Neurostimulator, dystonia, neuropathic pain and spasticity.
Post Edited (Stella Marie) : 2/17/2009 11:46:30 PM (GMT-7)